What would you do?

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klynne
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 1/14/2010 6:02 PM (GMT -6)   
Hi Everyone,

So I am stuck. I have now been to 6 docs. I have seen an Internal Doc who at least tested me for lymes. My ELSA was positive and I had one band show on the Western Blot they ran. I don't know however which number. He agreed to put me on antibiotics for two weeks. Doxy-100 mg twice a day. Well I figured in the mean time I could find another doc who might know more. Well that hasn't happened. I've been searching online for anyone in Utah who has Lymes trying to see if I can find out any info about a good doctor. Unfortunately I've had no luck.

So would you go back to the Dr who at least put me on the antibiotics and pray and see if he would continue them for another 4-6 weeks? Or do I try and find a naturopathic Dr. What are your thoughts. I really don't know what to do and hate to keep wasting my time and money. I want to get better. Just thought I would see if anyone has been in the same boat and what you did. I am totally open to natural remedies also. Since I have been off the antibiotics my nervous system symptoms have subsided but I figure they will return.

Also, once you have the symptoms such as tingling, numbness, being lightheaded how long do you think you've had lymes? Is this something I've had for quite sometime and is now finally manifesting? Sorry for all of the questions but I don't know where else to ask.

Cheezhead
Veteran Member


Date Joined May 2007
Total Posts : 517
   Posted 1/14/2010 10:37 PM (GMT -6)   
Klynne,
Welcome to Healingwell. Sorry you are having a hard time with doctors. Unfortunately most of us know all to well how difficult it is finding a doctor to treat Lyme disease. If you can find a naturopathic doctor near you that may be an option for you. Have you tried to find a LLMD yet? I'm not sure if there is any in Utah, you may need to travel out of state to see one. You could look at ilads.org and lymediseaseassociation.org for treatment guidelines, and doctor referrals.

Best wishes

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/14/2010 11:56 PM (GMT -6)   
Hi Klynne,

I'm not sure if I posted information to you yet regarding finding an LLMD, so if I did, I apologize for posting this again. You truly need to find a Lyme Literate Medical Doctor(LLMD), otherwise, you will not get the right treatment and you won't be treated long enough. Two weeks of Doxy at 200mg a day is not enough. Please read what I posted below on antibiotic dosing.

Dosage

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.


Please also read this website and get yourself educated about this disease.

www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html


Welcome to the forum! We're so glad that you found us:)

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, please email our long time member, Ticker at:
ko_@bellsouth.net

If you'd like more doctor suggestions, you can email stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/bod.htm if you want to learn a little bit more about Lyme Disease.

You will want to find an ILADS(International Lyme And Associated Diseases Society) doctor. The
ILADS site is a great place to read to get you started on your Lyme journey.
www.ilads.org/

For great info and links, please read the topic at the top of the first page of this forum titled, "New To Lyme?......Start Here!" It will help you get started learning about lyme.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


Agmaar
Regular Member


Date Joined Jan 2009
Total Posts : 376
   Posted 1/15/2010 12:34 AM (GMT -6)   
I've researched LLMDs in UT recently on lymenet.  There is one nat. in Bountiful - and not really anything else.
 
Other than that you may be looking at traveling to WA or CA.  There are several good Drs here in the Seattle area. 
 
We seriously would like to cut expenses and so we are still considering moving to UT.  Plus the kids/grandkids are there.  I plan on keeping my LLMD in seattle and also my psych ARNP.  We will travel here every couple of months. 
 
The expenses are probably less than you think if you plan ahead and look for specials on Southwest etc.  Also, a lot of LLMDs will let you do telephone consults in between office visist, so maybe you'd only have to travel every 3 months.
 
My LLMD here isn't covered by my insurance but all I can say is - it's by far the best money I've every spent. 
Rich
 
Lyme, anxitey, depression, chronic C. Pnuemoniae
 
"... expect the unexpected ..."  (O. Wilde)
 
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)
 
 


ineisa
Regular Member


Date Joined Dec 2009
Total Posts : 72
   Posted 1/15/2010 4:09 PM (GMT -6)   
Yeah, listen to the post above, I also was put on 200mg Doxycycline a day for 2 weeks and it did not help at all, have been sick all December, from the 31st I am on 400 mg and this week was the first week in a long time I feel normal. I am taking this now for 2 weeks and have another 3 weeks to go, a total of 5 weeks. I have a lyme doc appointment mid feb, could not get one earlier, but convinced my GP to give me the right medication.
Good luck and I hope you feel better, but you are not alone!

klynne
New Member


Date Joined Jan 2010
Total Posts : 10
   Posted 1/18/2010 6:01 PM (GMT -6)   
so I had my appointment with my Family Practice Doc. My ELSA was positive and was positive with band 41.

It's amazing reading everyones stories about having to tell their doctor the information they have found regarding Lymes-I was doing the same thing during this appointment. But he would only put me on 200 mg a day for four weeks. I tried getting him to do more but he wouldn't go for it. So I guess in the meantime I have really got to find an LLMD-which will be out of state.

Thanks everyone for all of your help. So nice to have a place to come and get support and info from.

JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 1/20/2010 8:18 AM (GMT -6)   
The Dr. C that I go to is not bad or greedy and has always explained EVERY option to me. The last LD seminar he went to introduced data stating Doxy will send the spirochetes into cyst form.
I was only ripped off by 2 doctors, both Natueropathic/MD's working out of Orlando.... I spent more time money and energy pursuing that route than any other only to wind up 30+ lbs. overweight and with a chronically irritated (now gone) gallbladder. The last I heard from them was a bogus billing of $105.00 for something I never even received.

Post Edited By Moderator (CajunGrl) : 1/22/2010 11:17:54 PM (GMT-7)


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 1/20/2010 10:34 AM (GMT -6)   
Don't think that it is the same Dr. C as mine in North Tampa.
A small group of committed citizens can change the world-it's the only thing that ever has.-M. Meade


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/21/2010 11:21 AM (GMT -6)   
I would like to caution EVERYONE not to decide on their own how much doxy (or any other abx) to take on a daily basis.

Most LLMD's suggest 300 - 400 mg per day, broke up into 2 doses (I think!).

The best thing to do is to go to the sticky "New to Lyme? Start here". There are tips for those who are taking Doxy, besides a ton of other good info!!!! Or at least use the search feature to be able to get the most info quickly.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 1/22/2010 11:37 PM (GMT -6)   
I was diagnosed with Lyme about 20 years ago. I was treated off and on with what would now be considered low doses of various antibiotics. I slowly improved and have not relapsed since I stopped treatment about 15 years ago.

I never fully recovered but I believe I have permanent damage from the Lyme. I have a few other medical conditions that are unrelated to Lyme so I still have chronic pain but it is nowhere near as bad as when the Lyme was in charge.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/23/2010 12:11 AM (GMT -6)   
Okay, that is enough about downing a doctor. We are here for support. Just because one persons experience was bad, does not mean that the next persons experience will be. I see Dr. C. and he is a VERY kind and caring person. He DOES NOT make you do anything that you don't want to do. If a person doesn't agree with his protocol, he is more than willing to do something different. He is NOT a greedy doctor and I've never overpaid for anything.

I will not tolerate this nonsense on this board. Take it to email.
 
 
4. No posts that attack, insult, "flame", defame, or abuse members or non-members.   Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member.  Decisions about health and well-being are highly personal, individual choices.  "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.


**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

Post Edited (CajunGrl) : 1/22/2010 11:45:19 PM (GMT-7)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/23/2010 12:33 AM (GMT -6)   
To All Members,

What I post about the "normal" dosing is what ILADS doctors follow. Everyone is different and may not need a higher dose. This is NOT set in stone, that's why you should see a doctor to tell you what dosage you should be on. MANY people that take a lower dose wind up coming back to this forum with a ton more symptoms than they started off with because they weren't put on a higher dose to begin with. All I can do as a Moderator, is give you the information that is out there. In the end, it is up to YOU and YOUR DOCTOR what protocol or dosage you are on.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


bucci
Veteran Member


Date Joined May 2006
Total Posts : 1477
   Posted 1/23/2010 1:37 AM (GMT -6)   
agmaar can you email me your seattle doc

bucci
hep c , lyme
Dad has lyme


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4296
   Posted 1/23/2010 7:09 AM (GMT -6)   
Hi klynne and welcome!
 
What happened in my case was that I became my own advocate and did lots of research..   I recommend reading books (if you are able to) and learning as much as you can about this disease.
 
In my situation I became better using alternative medicine and heavy detoxing.   I don't follow anyone's guidelines, LOL!  I follow my own guidelines because they worked for me..  
 
If you want the names of some books they are in the Sticky Thread "New to Lyme ~ Start Here!"
 
Hope that helps,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Detoxing Daily!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 4 years:  http://www.youtube.com/watch?v=ds81S61UvPA
 


Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 35853
   Posted 1/23/2010 10:46 AM (GMT -6)   
CajunGrl said...
Okay, that is enough about downing a doctor. We are here for support. Just because one persons experience was bad, does not mean that the next persons experience will be. I see Dr. C. and he is a VERY kind and caring person. He DOES NOT make you do anything that you don't want to do. If a person doesn't agree with his protocol, he is more than willing to do something different. He is NOT a greedy doctor and I've never overpaid for anything.

I will not tolerate this nonsense on this board. Take it to email.
.


Being honest about an experience doesn't not require 'bashing'. If you had a bad experience, or personalities clashed & feels the need to 'warn' someone else - that's something that belongs in a p.m.
It's been said:LD patients can be as ill as people w/ congest. heart failure & in as much pain as post-op patients.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/23/2010 11:10 AM (GMT -6)   
Thanks Traveler.

Saying that someone was "greedy" and "rude" is going beyond posting about a bad experience. Continuing to attack and insult someone in every post is way uncalled for. I don't care what doctor it is, it will not be tolerated here.

I will continue to delete any argumentive posts. If it continues, Admin will be notified. I already posted the rules here and they should be followed.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


OneWearyChick
Regular Member


Date Joined Jan 2010
Total Posts : 109
   Posted 1/23/2010 3:39 PM (GMT -6)   
CajunGrl said...
Thanks Traveler.

Saying that someone was "greedy" and "rude" is going beyond posting about a bad experience. Continuing to attack and insult someone in every post is way uncalled for. I don't care what doctor it is, it will not be tolerated here.

I will continue to delete any argumentive posts. If it continues, Admin will be notified. I already posted the rules here and they should be followed.

Why pm? Why not be open and honest? Why is that "bashing"? Because your experience was different than mine or others? My goodness, people discuss some of the most private issues openly, but we are discouraged from talking openly about someone we are to trust with our life (and our money). Explain the logic in that.
 
CajunGrl
Apparently you have taken offense to what I posted (and another member)- which was in honesty. It was not just my own experience with this doctor but another's. You should not have deleted my posts because you disagreed with what I posted. You are a moderator and although entitiled to your opinion, I and other members are entitled to ours.
 
It seems "unfair" for you to post your feelings, but  other's not be allowed to post their's with out censorship or removal. Shame on you!nono I broke no rules in my post, nor did the other poster. If asked, I will state my experience again. And I will continue to state my position on "things". We all learn from one another-whether we agree with them or not.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/23/2010 4:22 PM (GMT -6)   
OneWearyChic,

Please read the rules again. Peter put them there for a reason.

 
4. No posts that attack, insult, "flame", defame, or abuse members or non-members.   Respect other members of the community and don’t belittle, make fun off, or insult another member or non-member.  Decisions about health and well-being are highly personal, individual choices.  "Flaming" and insults, however, will not be tolerated. Agree to disagree. This applies to both the forums and chat.

Your post was deleted because you attacked and defamed a doctor. If it continues or you continue breaking rules, Admin will be notified.

Please get back on topic. Any argumentive, bashing or off topic posts will be deleted.

Thanks.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 1/23/2010 5:01 PM (GMT -6)   
Getting back to the subject. . . . kylnne, I hope you will find the closest LLMD to treat you as it will save you time, money and possibly your life. You need a doctor that is experienced in successfully treating lyme and all the coinfections. Even if you got the right amount of doxy for an extended length of time, you would probably find out down the road that you are also infected with something else like bartonella or babesia. This is a very complicated disease to diagnose and treat because the borrelia bacteria that causes what is commonly referred to as Lyme (not lymes) disease take many forms and has to be attacked simultaneously with several antibiotics. The reason doxy is used first is because it also kills another common coinfection.

Where did you get bitten? I was bitten in Montana by a wood tick, which was thought until recently not to carry lyme. There is no test that can identify this strain yet so I had to be diagnosed by symptoms rather than tests. Thank goodness I had the EM rash. There are many LLMD's that diagnose and treat according to symptoms. There are some doctors that require test results to confirm the diseases and this often results in people becoming deathly sick before they satisfy the test requirements. The earlier and more complete your treatment is begun the more likely you will have a full recovery. So don't waste time visiting doctors that have no knowledge of what you are fighting. I would also advise you not to mess around with herbal treatments until you have done antibiotics because these bacteria are kissing cousins to such horrible pathogens as malaria and syphilis. Save herbs for when you infection is under control.

You can contact ILADS for recommendation. Then ask about the Dr on the forum using the initial of his last name and location. You can request to be PM'd so that if a person has had a negative experience they can inform you privately. What bothered them may not concern you at all.

I just found out there is an LLMD in Montana that gives both abx and herbal, and am elated as I went all the way to Seattle last year. I have treated myself much of the time which is no fun either especially when your brain is so foggy you can't remember anything. Good luck.

Turquoise Sky
Regular Member


Date Joined Apr 2009
Total Posts : 250
   Posted 1/23/2010 7:17 PM (GMT -6)   
Hi Klynne,

My experience was that I was bitten in 2005, treated for 10 days with Doxy. 100 mg. twice a day. I seemed to recover and felt fine for several years. In March 2009, I relapsed. At first it seemed like the sinus infection that was going around work and even at home. I was treated with 3 weeks of Biaxin, then when the neuro. stuff and pain began, 5 weeks of Doxy, still only 100 mg. twice daily, until was lucky enough to be sent to an ID Dr. who was willing to treat me with IV ceftriaxone for 30 days. According to what I've read, that isn't even long enough. After that, went on herbal treatment, and am still on that. I am learning to take care of myself, listening to my body, keeping my immune system as happy as possible to avoid another relapse.

The info on here has been so helpful, and just being able to communicate with others who are suffering too, takes a little of the loneliness and fear out of it. All I can recommend is to follow what you feel is right for you. As Deejavu says, read as much as you are able and her detox bath is one of the best things that helped me to heal, during the IV month and even up to now. I was lucky enough to be treated even though I did not find a LLMD. Since then, I have found that there are several in PA, so if this happens again, I'll have more options.

Hope you find the right Dr. and healing.

KO-LD
Veteran Member


Date Joined Aug 2007
Total Posts : 887
   Posted 1/23/2010 11:58 PM (GMT -6)   
Cajungrl  you said,
 
"He DOES NOT make you do anything that you don't want to do. If a person doesn't agree with his protocol, he is more than willing to do something different. " 
 
That was not my personal experience, when I tried to ask his IV nurse about oral abx she barked at me "Dr. C. already told you what he thinks"  it was not open for discussion.   What he told me when I saw him was the only thing that can cure Lyme is IV Rocephin.
01 Tingling in fingers/toes both sides, not tested at that time for LD
07 Summer pos. WB, diag with LD, neg for co-infections thru Igenex
Abx - Doxy 100mg 2x/day for 3 weeks (before diagnosis)
Amoxicillin 1gm 2x/day for 1 month
Amoxicillin 1gm 3x/day with Probenecid 500mg 2x/day  5 months 
Dr. Zhang's protocol stopped after 6 months symptoms returned.  Started Buhner's protocol May 2009


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 1/24/2010 12:48 AM (GMT -6)   
KO,

When you have time, could you send me an email? I had your email but it's burried under 100's of posts.
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

lymediseasethroughmyeyes.blogspot.com/

Co-Moderator Lyme Disease Forum

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